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Copyright © 2010, Odessa Brown Children's Clinic. All rights reserved.
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Friday, August 20- Monday August 23, 2010
Northwest Sickle Cell Camp
Ages: 8-15
Location: Camp Burton, Vashon Island
Saturday, Sept 18th, 2010 (10am-2pm)
5th Annual Sickle Cell Walk
Seward Park
5895 Lake Washington Blvd. S
Seattle, WA 98118
Registration Fee: $25.00
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NWSSC NEWS
Bone Marrow Match Needed
Zyreal Oliver-Chandler has sickle-cell anemia and the only remedy, says his doctor, is a bone-marrow transplant. Because Zyreal is African American, it's difficult to find a matching donor. Read the complete story here;
http://seattletimes.nwsource.com/html/localnews/2009338943_bonemarrow15m.html
In April 2009, the NWSCC was recognized at the Sigma Gamma Rho SPEARS luncheon. The SPEARS foundation is the charitable works branch of the sorority. Many ladies expressed interest in being involved with youth that have Sickle Cell Disease. A partnership was formed and we hope to work together in the future on mentoring programs, tutoring programs and they hope to be involved with Sickle Cell Community Events. updated 6/09
As people poured into the African American Academy building on May 2, 2009 for the NorthWest Kidney Fest, the NWSCC and the Metropolitan Seattle Sickle Cell Task Force was there to greet them. The event featured 3 floors of free health screenings, information, music and activities. By the end of the day, we were able to test 26 individuals for Sickle Cell Trait and get the word out to even more about the importance of Sickle Cell Trait testing and being educated about Sickle Cell Disease. updated 6/09
May 20th, 2009, Speaking to a group of participants of the Infant Mortality Prevention program at El Centro de la Raza, the NWSCC was able to reach out to the Latino community. With the help of a medical translator, we presented slides and answered questions about Sickle Cell Disease and Sickle Cell Trait and almost all of the participants agreed to test for Sickle Cell Trait. updated 6/09
Interested in hosting a sickle cell event?
The NWSCC can help with meeting space and refreshments. Call 206-987-NWSC (6972) or email info@nwsicklecell.org for more information.
How Community Members Can Help
A healthy, well-informed community is everybody's business - whether or not you are personally affected by sickle cell disease. The Collaborative sponsors community events and activities aimed at helping all of us understand sickle cell and support our neighbors who are living with the disease. Contact us to schedule presentations or to learn more about how you can get involved.
Support Groups
If you or someone in your family is interested in hosting a sickle cell event, please let us know. The NWSCC will assist in providing meeting space and food. We have contacts with local medical providers who are available to speak at your event. The best educators are those who experience sickle cell every single day of their lives. Currently we are actively seeking adults with sickle cell who would like to meet and begin monthly discussions about topics of their interest.
Please call 206-987-NWSC (6972) or email info@nwsicklecell.org, if you are interested.
NWSCC NEWS
Woodland Park Zoo Day
On May 20, 2007 families and friends met at the Woodland Park Zoo in Seattle, WA to take part in an "Afternoon at the Zoo for Families with Sickle Cell". This event was an opportunity for families and caregivers of young children with sickle cell ages birth to 8 years old to meet each other, discuss the challenges and concerns they have with dealing with sickle cell, and have a brief education time led by Ruth White, ARNP.
Enjoying the marine life at the zoo.
Photovoice Event Highlights Creativity of Teens with Sickle Cell
In May 2006, the NWSCC hosted a spectacular reception at the Odessa Brown Children's Clinic to celebrate the completion of the "Photovoice by Teens with Sickle Cell" project. Representatives from the Puget Sound Blood Center, Children's hospital, and other community members came to the reception to meet the young artists and socialize with them outside of the hospital. As part of the project the participants--7 local teens with sickle cell--were given cameras and asked to photograph scenes that represented how their illness affects them or what their lives are like apart from their illness. Seema Mhatre, MSW, met with the seven teens throughout fall and winter and talked to them about what each photograph meant to them. The Photovoice project was a celebration of these young people and their accomplishments.
Joanita presents her "Life Without a Crisis" Photovoice Project.
Seahawk Joins Walk and Announces Sickle Cell Collaborative
On September 3, 2006, the first Walk for Sickle Cell Disease at Seward Park raised $10k and served as the official kickoff for the Northwest Sickle Cell Collaborative (NWSCC), new statewide collaborative to help families affected by sickle cell. Seattle Seahawks wide receiver Bobby Engram joined the walk and helped announce the NWSC.
Bobby Engram introduced his wife, Deanna, and their three children, including 8-year-old "Little Bobbi," who has sickle cell disease.
"Everything that our family has gone through is the reason why I am so glad that a new organization has been formed - the Northwest Sickle Cell Collaborative.
Made up of health care organizations, community groups and others, the Collaborative will educate people about sickle cell disease and trait and empower those affected to take control of their health," Engram said.
"I'm very thankful that all of these health organizations, community groups and individuals have come together to help us live better with sickle cell disease," he said. "It means a lot to me and my family."
Engram and Dr. Michael Bender, director of the Collaborative project, encouraged those participating in the Walk to put their names on a mailing list.
In the News
Washington State News Release 4/14/2007
Rep. Pettigrew pushes for action on sickle-cell
The Olympian 4/2/2007
Personal experience moves Engram to help fight disease
Seattle P-I 3/15/2007
Photo project helps teens describe life with painful disease
News Tribune 1/12/2007
When a receiver is also a carrier
The Seattle Times 8/30/2006
Now, it's dad Engram's chance to change a life
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